The Informonster Podcast
Episode 9: The COVID-19 Interoperability Alliance
August 27, 2020
On this episode of the Informonster Podcast, Charlie Harp is joined by Randy Woodward, Carol Macumber and Victor Lee, MD, to talk about the COVID 19 Interoperability Alliance, an initiative designed to provide value sets and resources to identify, understand and monitor COVID-19 information patterns. They discuss why the Alliance was formed, the problems the industry is currently facing and how the Alliance can help combat the pandemic.
I’m Victor Lee and I’m VP of clinical informatics.
Hi, Carol Macumber, EVP of Client Services.
Hello, Randy Woodward. I’m a Senior Clinical Architect and Client Success Manager.
So now, you know what they sound like, their titles, and they sound very unassuming but they are titans in the informatics industry. You have to trust me on that. Where I want to start out is kind of the origin story of the Interoperability Alliance. During the early days of the COVID pandemic, one of the things we were doing at clinical architecture is we were very carefully watching all the terminology things that were happening, relative to COVID, in the different code systems like SNOMED, LOINC, RxNorm, ICD-10, et cetera, and just trying to stay ahead of it all and keep track of it and keep our clients and other folks in the industry aware of what was going on. The terminology space and the data quality space is our wheelhouse, and we wanted to do the best we could to help our customers and friends in the industry stay up to date on what was going on. Part of what was also happening was, as we work with folks that are in the trenches on the front lines of COVID and things that were happening, we really felt like we wanted to do something because we’re not on the front lines. We’re on the back lines, if there is such a thing, and what we wanted to do is we wanted to do what we could to try to help in any way we could. So I circled the wagons at Clinical Architecture and brought the team together and said, you know, “What is it that we can do that could potentially help the industry get their arms around what is happening with COVID?” The folks on my team came up with some great ideas and some great folks to collaborate with because one of the things that we had decided is we didn’t want this to be a Clinical Architecture thing. We have tools and we have resources and we have incredibly knowledgeable people, but there are a lot of incredibly knowledgeable people and resources across healthcare and a lot of those folks kind of live in the back office just like we do. And we kind of assume that, just like us, they really wanted to do something to help. And so we put together the COVID-19 Interoperability Alliance and we reached out through our connections to a number of different contributors, and that’s how it all came about. And so what I’m going to do now is I’m going to ask Carol Macumber to kind of give us an idea of who was involved in the COVID-19 Interoperability Alliance and how they’re getting involved.
I have likened the, uh, group that we’ve been able to put together to an “Avengers assemble” kind of way, and have been just overly pleased with the response we’ve got from our friends and colleagues in the space, in particular in the terminology standards world. So along with Clinical Architecture, you know, we kind of started leading the COVID-19 Interoperability Alliance with our friends and colleagues at Logica, formerly HSPC, who are really focused on delivering open and accessible healthcare applications, utilizing standards, and normalizing things like clinical element models. That kind of grew into direct involvement from two of the largest terminology standards development organizations. With SNOMED International, the owners and producers of SNOMED clinical terms, along with the Regenstreif Institute, and the owners of LOINC. So, uh, with those friends on board, we were able to make a lot of progress, in terms of harmonizing content for use within COVID-19 related resources, and we grew to include some partners from the interoperability solution space and, uh, care evolution. The large moderator of projects built in the federal private and space for MITRE (sic). Probably most recently or in the context of the COVID-19 response, MITRE is the convener of the COVID-19 Healthcare Coalition and are looking at, you know, standardizing definitions for COVID-19 related elements, and therefore saw this great alignment to work with the COVID-19 Interoperability Alliance on the content that could be utilized within those elements; and also our strategic partners at Apollon, in terms of additional terminology and terminology asset management experts.
Thanks, Carol. I mean, I think it’s been pretty exciting to see people’s willingness to get involved in this initiative because building content is hard work. I think people often underestimate how challenging it can be to do the research and the digging, and put the thought that goes into creating content. And so when people are willing to dedicate their time, when organizations are willing to put time, into something like this, that doesn’t necessarily have a revenue upside, it doesn’t have a lot of cache, but at the end of the day, it can really have a big impact because what you’re doing is people are collaborating to do something instead of everybody spinning off and doing it in their own silos. So it’s been pretty impressive. And I really appreciate the work that you’ve put in to kind of wrangling a lot of those relationships.
I also need to mention our most recent addition to the Alliance, as we’re constantly looking for collaborators: The National Association of Community Health Centers, who serve as you know, the leading national advocacy organization in support of community-based health centers and the expansion of healthcare access for medically underserved and uninsured. They play a large role in multiple national initiatives around the COVID-19 response. And so we’re happy to have them on board and providing some on-the-front-line experience, in terms of gathering and utilizing data around COVID-19.
Excellent, and we’re constantly getting people asking to be collaborators. And so at the time you hear this podcast, if you want to know who the current collaborators are, I recommend you go to the website and check the collaborators page, and if you’re interested in becoming a collaborator, there’s a link on the website. Please don’t hesitate to reach out. We’re happy to have anybody that wants to be part of what we think is a pretty beneficial initiative. We’ve kind of talked about the “who.” I was going to ask Victor Lee, if you don’t mind, to kind of talk about the “what.” So we’ve got this Interoperability Alliance, but what exactly does it do? What are we doing?
Yeah, Charlie, I’m happy to address that, and in fact, I’ll also address a little bit of the “how,” because they’re somewhat intertwined, but what we’re doing is providing value sets related to COVID-19 and we’re putting it out there in the public domain. It’s our way of making a little dent in the universe and doing some good along the way. A value set, if you’re not familiar with that terminology, is basically a collection of terms that roll up to a common concept. And so we felt that we were naturally a good fit for doing this type of work because we kind of play in that space and we’ve worked with standard terminologies. So we’re accustomed to creating and maintaining value sets in a very efficient way. I would break down the types of value sets that we’re putting out there into the domain into two different buckets.
The first bucket is something I’ll call a normative bucket, and that is, when we have collaborators who are trying to leverage the resources that the Interoperability Alliance is providing, it’s a place where we can house value sets, have discussions and debates and kind of figure out what things might need to look like. So one example is how the Alliance is a storage place and a collaboration environment for FHIR implementation guides. So value sets that would need to be a part of that implementation guide are discussed and debated and refined as part of the work that we’re doing in the Alliance. So the normative bucket is the first bucket. The second bucket, for lack of a better term, I’ll refer to as utility value sets. These are value sets that can be used for any number of purposes, including clinical decision support, clinical trials or other types of research, analytics, basically any time where you need to interrogate a set of data. For example, in an EHR or an HIE, these utility value sets are intended just to be useful to support those types of purposes related to COVID-19.
And so those are kind of the two buckets of value sets. As Charlie and Carol were talking about the collaboration, there’s really a convergence of kind of three pieces that are making all this work. One is the community collaboration because we take feedback from our collaborators, and whether it’s a formal collaborator that’s listed on our website or if it’s just someone who makes an inquiry and states that they have a certain need and don’t want to put their company logo, we’re willing to work with the community and to understand what people’s value set needs are and to try to make those available. The second is having tooling to support, not just the development of value sets, but the collaborative review and discussion. And that’s something that you can find as a feature on the website. And then the third aspect is having a development and curation methodology so that we all understand what the scope of the value sets are and how they’re created and maintained. And I’ll just say in general, there can be variation in how different people create value sets. So if you, have several people say, “What is COPD?” If that’s something that needs to be investigated as a comorbidity of COVID-19, there may be flexibility in how many terms go into a COPD value set. And we tend to be a little bit more comprehensive as a first stab. And we’re willing again, to work with collaborators and try to understand how they need their value sets represented, and try to meet the needs of the most number of parties that is possible. But the methodology provides the transparency into how we’re doing the work, so that people can understand what they can expect if they were to view the contents of a value set.
Thanks, Victor. And the folks have been logging into the that collaborative work environment, and it seems like it’s gone pretty well, in terms of people working together and being able to kind of manage the workflow. I know that we’ve been doing a lot of the wrangling of some of the reference sets for things, but it seems like it’s gone pretty smoothly, all things considered. Do you agree?
I think so. And we’ve had a lot of engagement from various contributors, and or collaborators. There have been some various astute observations around, you know, “why are these terms in this value set?” And, “Is there some semantic difference between this?” And so it’s been a very educational and insightful conversation that we’ve had with many parties.
I think one of the things that’s interesting, when you start working in that kind of collaboration, (is) it’s kind of like evidence-based medicine is. You have a bunch of different people looking at it and using their own clinical experience to give you feedback on whether or not something is appropriate, where you might go into it initially, (And I’m not, I’m not clinical. So as usual, I’m out on a limb here, but) you might think something and then you get a few other people who clarify the context a little bit. And in the process, you might either dial some things in or dial some things out. But at the end of the day, what we’re trying to do is save people work. So instead of them having to go through the thought process on their own and figure things out, we’re going through a thought process that involves usually multiple people. So the hope is that when you get something, you download one of these free packages from the website or from wherever you’re getting it from, it’s going to save you work and provide value, right?
Yeah, absolutely. And again, just to underscore expectations for what people can expect to get out of value sets, I’ll provide another example of a recent discussion that we’ve had, both with community collaborators as well as internally. We recently had some feedback on some value sets related to Chronic Kidney Disease Stage Five, as well as a concept called End-stage Renal Disease. And I think you can think of End-stage Renal Disease as being a subset of patients with Chronic Kidney Disease Stage Five. And so a question would be, when we have a value set for Chronic Kidney Disease Stage Five, should we also add End-stage Renal Disease terms in there? And so different people might expect different things, but that’s just part of the conversation that we would have. It’s often very enlightening to try to understand the use cases that people are trying to use these value sets for. And it’s interesting to try to customize the work effort to make sure that we’re relevant to the problems that people are trying to solve.
Adding on to what Victor was saying is, I think, also the nice thing that comes out of this collaborative effort is some insurance around that use case, that context, that Victor’s talking about being included in the metadata that’s made available with the value sets, right? Value sets have context. They can’t typically just be used based upon whatever naming convention, or short descriptive name that’s been given. Instead, there’s metadata that can be included around inclusion and exclusion criteria. It can make it easier for implementers to pick up the most appropriate value set. Then in this case around COVID-19, I mean, there are various aspects that align with things like the CDC Person Under Investigation form, WHO forms, there may be users who are just in particular looking at specific use cases and want to see value sets aligning with those. To the extent possible, you know, as part of what the COVID-19 Interoperability Alliance is producing and making available, is also that information and that metadata around context, so that it’s clear as to what the purpose is for each of the value sets.
No, that’s a great point. I think that when I first started looking at quality measures, and the data elements, and the value sets that are expressed there, I was kind of struck by, if you grab a value set that has a reference set of terms associated with it and you just try to use it based upon the simple description, it’s kind of like going to the store and buying a can of food that says “meat” on it or something. You don’t have the context of what’s in the can. The inclusion criteria, the exclusion criteria, the rationale for this value set can make a really big difference as to how you’re going to use it. And capturing that (sic). And when you go to utilize something like that, you know, making sure that you take a minute to look at that can make a big difference. And so that’s an excellent point, Carol. So we’ve talked about why we did it and who’s involved in it, and Victor’s talked about kind of what are some of the assets and the process we go through with the other collaborators to make it happen. Randy, one of the things I’d like you to share is where does it go? Where can people get it? And I also think, because of your background in analytics kind of across Healthcare IT, talking about some of the ways people could also utilize the things that we’re producing in the interoperability Alliance (sic).
Sure, happy to talk about that stuff. First, we tried to make all of these value sets easily accessible to people and provided several options for how they can get their hands on them. To date, there have been over 600 value sets that have been developed by the Interoperability Alliance. You can find those on the downloads page of the website (COVID-19ia.org). You can also go to VSAC. And if you have a VSAC account, log in and right on the welcome page there’s a link to COVID related value sets, and you can find the same content published there as well, with a couple of caveats. And then finally, if you’re a Symedical customer, this content is also available within the subscription portal. And again, when we say subscription portal, that’s usually no cost. We just provide that service to our customers so that they can easily adjust it and use it throughout their organization.
Some Of the ways that people are using these value sets, and we’ve had many, many downloads of these contents from the COVID-19ia.org website, but some of the ways people are using them, I also participate on the COVID-19 Healthcare Collaboration Consortium that MITRE has convened, and they’re pointing people to these value sets so that they can align how they’re doing research and clinical trials. A lot of the work that they’re doing for the analytics that they’re running against their clinical decision support systems, and their EHR, and other data repositories, involve finding cohorts of patients. So they’re looking for people that have certain health conditions, or they’re taking certain medications, or, you know, they’ve had certain procedures done within a lookback period, and a lot of those criteria will boil down to a list of clinical codes that the Interoperability Alliance has bundled very neatly into these value sets. So those are some real-world ways that people are using them, and it’s exciting to see how these value sets have helped standardize the work that people are doing and allowed them to distribute their work, but do it in a way that can be combined from a broader understanding of COVID-19.
Randy, one thing you mentioned kind of triggered a thought, and it’s something I forgot to mention earlier, is around the way that we have grouped our value sets together. And because of the way that they’re represented in VSAC, with a value set being constrained to one code system at a time, we’ve presented the value set content on the Interoperability Alliance website in that same manner. And so if you’ve either had a chance to look at the Alliance workshop or the downloads section of the Alliance, you’ll notice that the value sets are grouped by code system. And so it’s really just to make it as easy as possible for us to store the content in a way that’s compatible with the value set authority center or VSAC. So you’ll find for example, collections of value sets that are organized by ICD-10 CM, ICD-10 PCS, HCPCS, SNOMED CT, RxNorm, LOINC, the usual suspects that you would expect, because they’re all recommended in the USCDI, the United States Core Data for Interoperability. Just a comment on how they’re organized and how you can expect to find what you’re looking for.
Yeah, Victor, you’re right. Thanks for pointing that out. When you go to VSAC, you can also find those 600+ value sets have been grouped by coding system, as Victor mentioned, into VSAC grouping value sets, and their are six of those, and those are the ones that you’ll find from the link on the VSAC welcome page for COVID-19 content. \.
So when it comes to the value sets and other content that we are working with our partners at Interoperability Alliance to satisfy the real world needs, who wants to talk about kind of what some of those needs are and how people could leverage the content, whatever their implementation stack might be?
Well, Victor, I’ve got a question for you. One of the challenges that I’ve seen with people that are using the content are how do they identify and hoard and use all of the new concepts that are just now being created specific to COVID-19? Things like brand new medications that don’t yet have official codes, or a brand new lab test. What are your thoughts on that?
Randy, that’s a good question. And actually, I don’t know if I’d be the best person to answer that (laughs).
I can take a semi-stab at it, in that I think part of it, Randy, depends on what the source of terminology it’s coming from. So the standards development organizations have all taken different approaches to creating content, to meet the emerging need, right? So we have our collaborators at SNOMED who created an interim March release, which is off cycle, for those of you who are used to getting your SNOMED content in January and July. Even though there was COVID-19 related content in January, they created an interim release in March to address some rapid terminology needs from their member countries, including the United States. Um, but that still wasn’t enough to cover and keep up with the ever-changing information around COVID, as we learned more as a country, and as the world discovered more about the details and the terminology around COVID 19. And so they created pre-released content, which, you know, was posted as, “buyer beware, uh, you know, these concepts may be temporary.” Until they appear on the July, 2020 release, there is no guarantee. Although, you know, we have great confidence in our friends at SNOMED, they wouldn’t be creating concepts unless they were pretty sure about their validity. Uh, there was no guarantee, right? And so implementers had to take that with a grain of salt and say, “Okay, well at least I have a description and I have a temporary identifier that we could utilize.” But not all systems can just simply create new codes within a namespace that they’re typically subscribing to, right? So from the Clinical Architecture perspective, you know, we made it a point to include that content as quickly as possible, and the subscription content that we provide to users of Clinical Architecture solutions. Outside of that, you know, your system would have to implement those probably as one-offs, and then when the release comes out in July, reconcile them, and hopefully being able to do so, not only at the identifier level, because they may have changed, at the semantic level in terms of description, and even perhaps the relationships that were modeled. Whereas, you know, you have other standards development organizations like RxNorm, that releases more frequently, and so those concepts were released as part of an official RxNorm release, and could be readily available and used in production. The answer kind of depends on which domain and which terminology you were looking at.
That’s an excellent point, Carol. And I think that one of the things that I think is interesting, when it comes to analytics in healthcare, and normalization, and all the things that we see every day, I think in a lot of ways, it’s kind like, uh, you guys have seen the movie Jurassic park, right? When the guy looks in the side view mirror and the Tyrannosaurus is there, and it’s like things are larger than they appear? I think that when you look at the standards, for the longest time they operated in a very retrospective mode. And I don’t mean this to disparage the standards, but I think that we are moving from a place, and COVID is a great example of this, where you can’t wait a year until the next release. Things are moving faster. It’s kind of like when you play Missile Command, you know? At the beginning of Missile Command, something comes out, something comes out, and I know I’ve gone retro for old timers like me, but after awhile, the missiles are coming down pretty fast. You’ve got to work a lot faster to deal with it. And I think that when it comes to terminology, especially when we encounter these disruptive things, we as a collective need to be better at responding faster. And as organizations that are dealing with this data, and we do this with a lot of our clients now, where we say, “Don’t map to the standard map, to an extension of the standard.” The standards always lag what’s happening in healthcare because the standards have to take the time to research and author and produce an output things, whereas when you encounter something in the trench, you encounter it. You don’t have time to do a lot of the rigor that goes into good terminology practices of creating a standard. So what we typically recommend is that organizations take a standard and then create an extension on that standard, their own local extension, internal to the organization, so when they encounter something that’s new, they have a place to put everything, so that when the standard comes out with its official term for COVID, or for whatever, all they have to do is take the thing that they created in their extension, re-point it to the standard, and then deprecate the thing they created. And we actually have a number of tools that streamline that process, but anybody can do that. If you’re targeting a terminology, you’re normalizing, or creating a construct, the whole idea of creating a proxy concept and an extension is necessary as long as the standards are going to lag behind what’s happening in the front lines. Does that make sense?
It makes sense to me. I mean, I think it’s also worth noting that all of that content, for example, they came out from SNOMED, and was pre-released content from March to July, and is now part of the July release, still won’t be available in the US edition of SNOMED until September, which leaves people somewhat of in the lurch, unless they’re kind of handling their terminology similar to the way that Charlie is described.
And we’ve, within Clinical Architecture, I believe our version of SNOMED, we just added those to our distribution package of SNOMED. There’s a commitment to that, when you do something like that, you have to reconcile it, just like when we added pre-release terms to LOINC, knowing that, you know, they might not be what they ultimately released, and it was a buyers be aware situation. We just took it upon ourselves to say, “Okay, whatever happens, we’ll deal with it.” But right now, people need to be able to do this work. They need to be able to normalize things. And with something like COVID where the analytics, the telemetry, is so important to understand what’s happening, you don’t want to wait and do that six months from now. You want to try to marshal that information as quickly as possible. So one of the things I was going to talk about also in this podcast is this whole idea of where do we go from here? I’m optimistic that the COVID-19 Interoperability Alliance is something that we kind of stood up temporarily to help the industry, and meet some of the data needs of the industry, to kind of get through this and to learn some stuff in the process. I really think that going forward, evolving that into a “public health Interoperability Alliance,” because COVID is one thing, but there are other conditions or other high volume situations, heaven forbid there may be future outbreaks of a similar nature, that we need to get our arms around fairly quickly. And I think evolving what we’ve done with our partners into a space that doesn’t just focus on COVID, but focuses on needs around public health, is something that would be really beneficial. It would keep the momentum of what we’ve done, and we could just really point it at whatever the need of the day is going forward. What do you guys think about that?
Yeah, I think there probably has been a historical need for value sets to support research and clinical trials and decision support in the past. Many of us in our lifetimes are probably familiar with some other more recent infectious disease outbreaks: Ebola, H1N1, and a variety of other infectious disease outbreaks around the world. And many of them may not have had a huge impact in the United States, but really this is something that I think we could take, or has already not been restricted to a US focus, and as we think about some of the diseases that I just mentioned, as well as just thinking about nationally notifiable conditions as listed by the CDC, and individual States have different reporting requirements, I think there is a potential benefit for us having to extend the work that we’ve done with COVID-19 to many other infectious diseases. So I would say that we’re very interested in hearing from the community and understanding what kinds of things community stakeholders are interested in focusing on next. There’s a lot to be said for doing some upfront preparation and being proactive, as opposed to reacting when outbreaks occur. And so having some kind of a framework, some structure, some architecture in place, where there’s a known entity that’s transparent and trusted and can provide this kind of service, I think would be a valuable part of that infrastructure.
Another example that I can think of would be following the model that we’ve seen with the Healthcare COVID Coalition, where they’re aligning research across many different organizations. I could see how that might apply to something like rare genetic conditions, or where people are trying to study populations that are not very prevalent in any one geographic location, but could benefit from this type of coordinated work across the country or across the world.
I spoke at the HITEC meeting in April, and one of the things that I threw out there I thought was kind of a low-tech thing. And what I suggested at the time to the ONC was that, when a crisis like COVID happens, and people are building those extension terms, people are building terms, local terms in their EHR and in their platform, and one of the things we saw with COVID is the naming convention was all over the place. And so they name it all these different things, and then at some point when you go to harmonize it, you’ve got to deal with all that variance in how people are describing it. And one of the things I suggested in the meeting was that when something like this happens, we need a place to go to, to say, “What should I call this?” Because that’s one of the things we struggle with in healthcare all the time. This whole concept of semantics. What do I call it? Because I kept thinking, “Well, someone should make a place where we go to figure out what to call it.” And then I thought to myself, “Charlie, you made a place.” So maybe one of the things we could do in the future is, when something like this happens, just provide semantic guidance to say, “If you’re in a local hospital and you’re creating a test code for this thing, here’s a good way to name it.” And if everybody follows that advice, even if it’s not perfect, then when the data starts to move to a place where we’re going to do something with it, at least we’ve all called it the same thing. We’ve used similar semantics so that we can take advantage of that. Am I crazy when I say something like that? Or does that make sense?
No, I think that makes a lot of sense. We’ve even seen an evolution in what we have called the virus that causes COVID-19. I don’t remember some of the earlier iterations, but it eventually landed on SARS Coronavirus 2. And there are a variety of abbreviations that we’ve seen for that as well. So for something where you have one name for a virus and another name for the condition, there’s already some complexity there, but you also have variation in how we call each of those concepts as well. So I think it’s incredibly valuable just to align on the semantics and specifically what we call things. So we have a better shot at interoperability in the future.
I think another example really is just – or one of the great things that has come out of this is just the pure collaboration that’s happened, and it’s not necessarily directly related always to the value sets that the COVID-19 Interoperability Alliance has produced, but just being able to convene the appropriate resources and experts for a particular topic. So, you know, extending that to other public health issues and utilizing the collaborative nature of the Interoperability Alliance to call upon our fellow Avengers to join the good fight. I mean, I think it’s something that was also lacking, right? So our, uh, collaborators at SNOMED were trying to provide coding guidance, specifically around specimen and specimen type, for their members, which reaches a lot across the world. And through the Alliance, we were able to bring on experts from the laboratory space to provide that guidance. And I think that’s a need that the Alliance has been able to fill, right? And do so pretty efficiently on some regular calls. And we have been just so pleased at the response we’ve gotten from any of the partners we have at places like APHL, and the FDA, and other sources not only kind of within the US, but kind of worldwide, and other member countries that have just come to the calls and provided their expertise to ensure that these public goods are developed to the highest quality possible.
I also think, Carol, one of the things that people struggle with is when there’s an emergency, when something’s happening fast, one of the challenges I think people have with standards is standards tend to be more deliberate. Historically, standards tended to be the T-Rex in the rear view mirror. And as the need gets closer and closer to the events that are transpiring, what ends up happening is the people that start to create terminology and create these assets are the local resources in the health systems. They don’t have time to deliberate. They have to act having the collaborative environment that we’ve had, it gives you the benefit of the wisdom and knowledge of the people that have been kind of holding up healthcare terminology standards in this knowledge for decades. But it also, I think, creates that sense of urgency, where they get together and they act. They realize it might be temporary. They realize they might have to come back later and clean some things up. And that’s one of the things about this. When we talk about a “public health Interoperability Alliance,” we don’t want to fall into a bucket where we’re becoming another standard; where we’re far back in the rear-view mirror. When I think about the Interoperability Alliance, I’m really thinking about like a SWAT team. Something’s happening, and we need to create a data asset that can help people wrangle this in a meaningful, useful way while the rest of the industry has time to deliberate and figure out what we do later. Do you have any of you think that I’m off base when I think about it like that?
No. I mean, I think there’s – there’s both ends of it, right? There’s the reality that people have to make on-the-ground decisions and implement solutions without having to wait for a new release of SNOMED, you know, six months later. And then there’s the long-term goals of being able to standardize and do retrospective studies and glean more information from that going forward. And in order to do that, we know that terminology greatly improves the level of quality of those studies and those data analyses that go on when they look backwards. But you’re right, absolutely. There’s no way those responsible for implementing new codes in, uh, within systems can wait six months.
Well, and the other thing too, when I think about the – this idea of the Interoperability Alliance, one of the things that I’ve struggled with, you know, I’ve been doing this 30 years on and off… Well, mostly on. When I would go out and I would find a resource, a free resource, in the public domain, one of the things I always have to do is kind of, I would call it, “Check the sell-by date.” When you’re doing something for free, and I’m talking about really free, one of the things that I think happens all too often is people do it for a little while and then it loses steam. And when you finally, you have a need, you find this thing, you kind of check the sell-by date and you realize, “Oh, this is from 2010,” and it hasn’t really been touched since then. And you kind of have to decide, “Do I blow the cobwebs off of this and try to use it, or, you know, is it so woefully out of date that the terms that it has, you know, are probably all deprecated or may not even be in the same place in the hierarchy by now?” When I think about the Interoperability Alliance, I think that it’s going to require a certain amount of dedication because I wouldn’t want it to one of those things with an old sell-by date. I’d want it to be something where anybody that knows anything about building value sets against standards knows it’s a lifestyle choice. There’s semantic drift. The terminologies are constantly changing, and going through that process of trying to determine, “What should leave and what should stay and what would I need to pull back in?” Beause it got moved in the hierarchy if you’re using rules. And so it’s one of those things where it’s a labor of love, and if we do that, every single asset you add… For example, if, you know, the COVID thing, if we deal with it effectively as a planet and it recedes into history, theoretically, we can say these value sets are going to be not relevant. And at some point we’re going to set a sell-by date and say, “We’re not going to maintain these anymore because there’s not really a good use case for them, if we’re able to resolve this at some point in the future,” but that’s not necessarily true for things like notable diseases. Diabetes I don’t think is going away anytime soon. So if we were to do something like that, you know, there’s a certain amount of rigor and dedication that has to go on with that so that people don’t pick something up and think, “Oh great, this is going to save me a lot of work. I can use this,” only to find that it hasn’t been touched in five years. You know what I mean?
Yeah, absolutely. Really the conversation that we have going forward, also, as we reach out to additional agencies, public health agencies, federal agencies like the Office of the National Coordinator, to have that conversation about providing resources that have a group of subject matter experts that have committed to maintaining them for as long as it makes sense, some of the resources that are being created, or have been created, were done so very early on in the COVID-19 response journey, at least here in the United States. The starter sets, the samples that were made available are just simply, already in six months, very out of date and stale. Right? And so part of what we are looking to provide is that consistency and some assurance that the content is going to be maintained.
And I’d also like to think that that’s some of the value that the interoperability Alliance is providing to the community because I think everyone understands the appeal of creating a value set because it’s that shiny new object, and it’s exciting, and it’s fun to create something new. I think what some people don’t immediately recognize is the care and feeding of value sets, and, you know, the semantic drift that you talked about, Charlie, and how things evolve over time. And we’ve had a lot of visibility into how terminologies evolve, how drugs are added to the market, and so you start seeing new things appear in RxNorm, or how new brand names of an existing drug come out, or how SNOMED might modify its hierarchies and inactivate some terms and add new ones elsewhere. All of that becomes transparent when you have intentional rule-based value set definitions, and you’re able to recalculate their expansions over time, and you sometimes have a lot of visibility into all those changes that occur. And so the fact that the Alliance, the Interoperability Alliance is doing that as a service to the community, I think takes some of that burden off of people who may not be accustomed to that kind of updates and maintenance activity. So hopefully it’s one way that we’re giving back to the world.
And I think it’s worth noting, people may not realize this, but there is a lot of work going into this and Victor, Lois, folks on your team have been working hard on, you know, helping to identify the terms. You’d gone on the value sets. I know we have a lot of partner resources that have also put a lot of energy and work into it. And so it is, it is something where… I’ve always said, I worked for content companies in the past and I know a lot of you have to, and content is hard. Content is hard work. It takes a lot of research, and it never sleeps, and it never gets smaller because as the world spins, we just create more information and more knowledge, and that increase in knowledge causes an increase in the content you need to accumulate to cover it. It’s a great deal of work that goes into it and I really appreciate everything that both our team and the team of our partner members of the Interoperability Alliance had put into it. Carol, if somebody is listening to this podcast and they’re thinking, “Oh boy, I’d like to do all that hard work Charlie’s talking about,” what would you say to them?
Uh, I’d say, uh, join the fight! Go fight the good fight with us. Um, you can find us, obviously at COVID-19IAA.com, There are multiple ways that you can either provide feedback on what’s there or contact us to be a contributor. The more the merrier.
Absolutely, and if you have thoughts or ideas, as we consider how we can move this forward and add additional value around public health, we’re all ears! Clinical Architecture, we’re always happy to talk to anybody that wants to share ideas. We have fantastic members, very sharp, dedicated folks that are passionate about the impact that good information can have on healthcare. And so unless there’s anything else anybody on the podcast would like to share?
Yeah. I just want to say, you know, it doesn’t necessarily mean that you have to put in a lot of effort to get involved. Sometimes, it’s just as simple as asking the question about whether a value set exists, or inquiring about its membership. It’s not that we’re expecting everybody to do a lot of heavy lifting and join weekly calls. The mere act of expressing interest in the topic, and just adding your perspective, I think is incredibly valuable not just to the Alliance, but to the community at large. So I’d really encourage anyone who has any interest in exploring value sets or use cases for value set content to just hit us up. COVID-19iaa.org, and we’d love to hear from you.
Yeah, Victor makes an excellent point. The best way to improve something is to use it. And we could be building value sets and other content assets until the cows come home, but it takes somebody to use it to tell us how to make it better. So that’s a great point, Victor. All right, first thing I’d like to do is thank Carol and Randy and Victor for their time today. I chose the three of them because they’ve been instrumental in everything we’ve been doing with the Interoperability Alliance, and it’s one of those things where Randy, Victor, Carol, they all have a day job. Helping us to wrangle, and work with our partners, and do this stuff on the Interoperability Alliance, is probably above and beyond their day job. In fact, recording this podcast, where it might seem like it’s a big treat, I’m sure they were thinking, “Oh, it’s something else I have to do a lot with my day job.” So thanks, you guys, for being a part of this today. And I also want to thank everybody who listened. If you guys have any questions, feel free to reach out. And I encourage you, just like Victor said, to visit the website. And I think underneath the podcast, we might be able to put a link so you guys can go there. I’ll give you guys one last chance. If you want to say anything. Randy?
I’m good, thanks Charlie.
Yep, I’m good too, thanks.
All good. Thank you, sir.
All right, well I’m Charlie Harp, and this has been the Informonster Podcast. Thanks again for listening. We hope it was useful. And we look forward to talking to you again.
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